Hello, everyone,
Sorry for falling behind with regards to updates, between foul weather, running a business, this, that, and the other thing..... I've had to shift my priorities elsewhere, although I have managed to keep up with email.
So here goes:
I/We am/are in the process of adding an additional resources page. Urethral Stricture Resources will, within a month, host a fairly impressive and (hopefully) one-stop shop for all of your informational needs. In order to do this, We need your help, as most of our information applies only to the United States, Canada, Mexico, and the U.K. . Our viewers (thus far) hail from 22 countries, many, in areas with no documented urological surgeons. So please, send your (subject to verification) applicable information to:
urethral[no spam]strictures at yahoo dot com
We will have listings for surgeons who specialize in urethral problems, vendors for catheters, ostomy and incontinence supplies, manufacturers of medical devices, pharmaceutical manufacturers - (brand and generic), pharmaceutical assistance programs, and other good stuff.
Many thanks for the visits to the site, it is our hope that your questions have been answered, and that we have been of help to you.
Per: Moderators Cesar and Timothy
WELCOME!
Tuesday, January 24, 2012
Thursday, January 12, 2012
Frontiers in Reconstructive Urology, 2012- Part 1, The Center for Urologic Reconstruction® , Detroit, MI, U.S.A.
Preface:
May this year be more healthy, productive, peaceful and fulfilling than the last, and in that context, let's begin 2012 with the encouraging news that we are now (mutually) linked with RECONSTRUCTIVE UROLOGY , the website for dissemination of research and information by Doctors Richard Santucci, M.D., and Mang Chen, M.D. . We hope that which follows does their work for the advancement of knowledge, understanding, and utilization of novel surgical techniques in the field of reconstructive surgery of the lower urinary tract justice. Their site features in-depth information, resources, and HD video(s) on a myriad of topics with regards to reconstructive procedures of the lower urinary tract including the bladder, urethra, and external genitalia.
It is work such as theirs which provides hope that we can once again resume a normal life, free of the discomfort and constant concern which often accompanies the diagnosis of urethral stricture disease.
A little biographical info: These gentleman have been at the forefront of research into treatments for urethral stricture disease for (probably) longer than anyone in the United States. I (Moderator:Tim) remember reading references to the work(s) of Dr. Santucci during the latter days of CompuServe, Prodigy, and shortly before AOL began littering every (snail) mailbox on earth with floppy's and CD's.
Dr. Santucci's improvements in the techniques for the harvesting, preparation, and positioning of buccal mucosal onlay autograft material during urethroplastic procedures are included within the standard curriculum of many urology residency programs in the United States, and elsewhere. His group was the first to issue reports with regards to statistics of complications and recurrence following various urethral procedures, and were really the first to shed light on the fact that a more specialized field of reconstructive urethral urology was necessary. Dr. Santucci also travels abroad, often to under-served regions of the world, sharing his techniques and training local surgeons in advances in reconstructive urology.
We were tempted to write that Dr. Chen could very well be considered the "Robin" character to Dr. Santucci's "Batman", however, that would be unfair, as our research has shown that Dr. Chen is considered to be the "patron saint" of those in need of substantial reconstruction of the lower urinary tract. His work in advances in techniques in "reconstructive trauma urology" (for lack of a better term) are utilized in trauma centers and major hospitals throughout North America.
This may well be reaching for the stars, but our greatest hope for this working relationship would be the possibility that someone substantially benefits from information and/or resources provided through our mutual cooperation.
The Center for Urologic Reconstruction® at Detroit Receiving Hospital
Reconstructive Urology
Per: Moderators: Cesar and Timothy
May this year be more healthy, productive, peaceful and fulfilling than the last, and in that context, let's begin 2012 with the encouraging news that we are now (mutually) linked with RECONSTRUCTIVE UROLOGY , the website for dissemination of research and information by Doctors Richard Santucci, M.D., and Mang Chen, M.D. . We hope that which follows does their work for the advancement of knowledge, understanding, and utilization of novel surgical techniques in the field of reconstructive surgery of the lower urinary tract justice. Their site features in-depth information, resources, and HD video(s) on a myriad of topics with regards to reconstructive procedures of the lower urinary tract including the bladder, urethra, and external genitalia.
It is work such as theirs which provides hope that we can once again resume a normal life, free of the discomfort and constant concern which often accompanies the diagnosis of urethral stricture disease.
A little biographical info: These gentleman have been at the forefront of research into treatments for urethral stricture disease for (probably) longer than anyone in the United States. I (Moderator:Tim) remember reading references to the work(s) of Dr. Santucci during the latter days of CompuServe, Prodigy, and shortly before AOL began littering every (snail) mailbox on earth with floppy's and CD's.
Dr. Santucci's improvements in the techniques for the harvesting, preparation, and positioning of buccal mucosal onlay autograft material during urethroplastic procedures are included within the standard curriculum of many urology residency programs in the United States, and elsewhere. His group was the first to issue reports with regards to statistics of complications and recurrence following various urethral procedures, and were really the first to shed light on the fact that a more specialized field of reconstructive urethral urology was necessary. Dr. Santucci also travels abroad, often to under-served regions of the world, sharing his techniques and training local surgeons in advances in reconstructive urology.
We were tempted to write that Dr. Chen could very well be considered the "Robin" character to Dr. Santucci's "Batman", however, that would be unfair, as our research has shown that Dr. Chen is considered to be the "patron saint" of those in need of substantial reconstruction of the lower urinary tract. His work in advances in techniques in "reconstructive trauma urology" (for lack of a better term) are utilized in trauma centers and major hospitals throughout North America.
This may well be reaching for the stars, but our greatest hope for this working relationship would be the possibility that someone substantially benefits from information and/or resources provided through our mutual cooperation.
The Center for Urologic Reconstruction® at Detroit Receiving Hospital
Reconstructive Urology
Per: Moderators: Cesar and Timothy
Tuesday, January 10, 2012
The advantages of in-home uroflowmetry, AN UPDATE - Part 1
The original post:
In the mid-1980's, my urologist urged me to use a device for uroflowmetry which looked like a small rectangular plastic fish-tank prior to commencing each office visit. The urine flowed through small "trap doors" which activated at four stages. The urine measured at each stage was compared to a chart that provided a mean-value which was charted for comparison to a base-line obtained soon after each urethral surgery. Eventually, I was prompted to purchase one of these now-extinct "manual urine flow gauges" (which lasted ten years) to track thrice-weekly measurements which really did help by forcing me to go for a dilitation/urethrotomy, or whatever - while the stricture was in a more open state, allowing for a "kinder instrumentation" or easier urethrotomy.
Ask your urologist if he or she feels this type of tracking would be beneficial in your case, there is a device *which is FDA approved, and made in the U.K. known as the Uflow urine meter which is not easily available in North America. With shipping, the cost is around $23.00 U.S. A base-line (in-office) uroflowmetric study will have to be done for comparison to your initial results. The savings in discomfort should be well worth the investment!
*a brief update: While researching for this post, I read documentation stating that the device was FDA (USA) approved. That information was apparently inaccurate, and that documentation has been withdrawn from publication. I have edited the original post to reflect this change. Today, 13 January 2012, I will make an effort to contact the manufacturer of the Uflow urine meter, Medical Devices Technology International, and report my findings as soon a possible. I can tell you that from what I have read, they seem to be very reputable and quality conscious (my opinion). I am told that the device may not require FDA approval.
Status: Will report
* another update 14 January 2012: we have been in contact with MDTI, and they provided a phone number to their product information and engineering department with statement that the gentleman there will answer our questions to the best of his ability. I will procure a VOIP phone on Monday, and proceed with a "thoughtful interrogation. They replied to the email request within an hour of its receipt, that's pretty good in my book!
Status: Will report after our conversation. If possible, I will also inquire into direct sourcing from within the U.S. , and make the case that there's probably a market here for the Uflow Urine Meter.
Per:Moderator Tim
In the mid-1980's, my urologist urged me to use a device for uroflowmetry which looked like a small rectangular plastic fish-tank prior to commencing each office visit. The urine flowed through small "trap doors" which activated at four stages. The urine measured at each stage was compared to a chart that provided a mean-value which was charted for comparison to a base-line obtained soon after each urethral surgery. Eventually, I was prompted to purchase one of these now-extinct "manual urine flow gauges" (which lasted ten years) to track thrice-weekly measurements which really did help by forcing me to go for a dilitation/urethrotomy, or whatever - while the stricture was in a more open state, allowing for a "kinder instrumentation" or easier urethrotomy.
Ask your urologist if he or she feels this type of tracking would be beneficial in your case, there is a device *which is FDA approved, and made in the U.K. known as the Uflow urine meter which is not easily available in North America. With shipping, the cost is around $23.00 U.S. A base-line (in-office) uroflowmetric study will have to be done for comparison to your initial results. The savings in discomfort should be well worth the investment!
*a brief update: While researching for this post, I read documentation stating that the device was FDA (USA) approved. That information was apparently inaccurate, and that documentation has been withdrawn from publication. I have edited the original post to reflect this change. Today, 13 January 2012, I will make an effort to contact the manufacturer of the Uflow urine meter, Medical Devices Technology International, and report my findings as soon a possible. I can tell you that from what I have read, they seem to be very reputable and quality conscious (my opinion). I am told that the device may not require FDA approval.
Status: Will report
* another update 14 January 2012: we have been in contact with MDTI, and they provided a phone number to their product information and engineering department with statement that the gentleman there will answer our questions to the best of his ability. I will procure a VOIP phone on Monday, and proceed with a "thoughtful interrogation. They replied to the email request within an hour of its receipt, that's pretty good in my book!
Status: Will report after our conversation. If possible, I will also inquire into direct sourcing from within the U.S. , and make the case that there's probably a market here for the Uflow Urine Meter.
Per:Moderator Tim
Tuesday, December 20, 2011
Upcoming posts...
My urologist informs me that a software routine is under testing for the DaVinci Robotic Surgical System with regards to the buccal mucosal onlay graft, and penile flap onlay graft urethroplastic procedures. We should see their availability by mid-2012, he stated that it will allow for better positioning of the graft with more precise suturing capabilities, and a shorter O.R. time.
Also, another pharmaceutical company is looking into manufacturing Urised <---LET'S HOPE THIS HAPPENS
That's all folks! Enjoy your Christmas and New Year holidays!
Also, another pharmaceutical company is looking into manufacturing Urised <---LET'S HOPE THIS HAPPENS
That's all folks! Enjoy your Christmas and New Year holidays!
Monday, December 19, 2011
Still taking time off for the holidays, but an update anyway..
December 7th, 2011: Things have been piling up on both coasts, so we're going to take a few days off from posting. The Urethral Stricture Support Blog will be monitored daily. Please feel free to post responses, questions or commentary.
Have a wonderful Christmas Season!
December 19th, 2011: A New Jersey licensed urologist has agreed to do two posts (commencing in mid-January). We may try to establish a live chat should the stats stay in an upward direction.
Have a wonderful Christmas Season!
December 19th, 2011: A New Jersey licensed urologist has agreed to do two posts (commencing in mid-January). We may try to establish a live chat should the stats stay in an upward direction.
Wednesday, December 7, 2011
OPINION: How best to proceed with life after receiving the diagnosis of urethral stricture disease PART 2
*"Scott", continued: Our urologist wanted him to undergo an immediate open urethroplasty, and explained that the procedure offered the best chance for cure. Without it, he felt that "Scott" would be looking at a receiving a partial urostomy within a very few years. The family conceded, and he eventually went to Cornell Presbyterian Medical Center in New York City. He underwent several individual "staged" surgeries, the last of which was a plastic reconstructive procedure. I do not know the eventual outcome, however, he did function well for at least three years afterwards.
Optical urethral surgery has only been around since the early 1950's. Rigid cystoscopes which were pioneered because of WWII had the reputation of causing damage to the urethra when passed past the penile urethra, and into the bulbar aspect of the structure. This damage was often resultant in strictures, and visual procedures were reserved for only penile-area defects, and T.U.R.P. (trans urethral resection of the prostate). In the early 1970's, advances in fiber optics allowed for the development of the flexible cystoscope, and the inception of visual internal urethral procedures as we know them today.
When you combine all of this information, it becomes somewhat apparent that the best way in which to persevere is to know your condition, your body, and your psyche thoroughly. While this disorder/disease/malady is not rare, it is not at the forefront of medical priority, sans a very few research institutions and reconstructive urologists. Education is the key to living with the diagnosis of urethral stricture stenosis.
Per: Moderator Tim
Optical urethral surgery has only been around since the early 1950's. Rigid cystoscopes which were pioneered because of WWII had the reputation of causing damage to the urethra when passed past the penile urethra, and into the bulbar aspect of the structure. This damage was often resultant in strictures, and visual procedures were reserved for only penile-area defects, and T.U.R.P. (trans urethral resection of the prostate). In the early 1970's, advances in fiber optics allowed for the development of the flexible cystoscope, and the inception of visual internal urethral procedures as we know them today.
When you combine all of this information, it becomes somewhat apparent that the best way in which to persevere is to know your condition, your body, and your psyche thoroughly. While this disorder/disease/malady is not rare, it is not at the forefront of medical priority, sans a very few research institutions and reconstructive urologists. Education is the key to living with the diagnosis of urethral stricture stenosis.
Per: Moderator Tim
OPINION: How best to proceed with life after receiving the diagnosis of urethral stricture disease PART 1
*In 1992, my urologist asked if I would speak to a 16 year old and his family after they received the news that the young adult had been diagnosed as having a rather severe case of urethral stricture disease. The case was so severe that a cystoscope-guided dilitation with filiform and followers was attempted, and the filiform was unable to thread itself through the stricture, and into the bladder. (*I will elaborate more on this later) "Scott" was only the second person whom I had encountered besides myself who had a stricture. The other was a friend, and the subject of difficult urination came up after he complained of "dreading each and every trip to the bathroom", he then proceeded to tell me what a stricture was, and that he had been diagnosed at age 17. We compared notes, and our experiences were quite similar.
There are no accurate statistics of the percentage of the male population with the malady. The co-moderator of this forum goes to a prominent west-coast urologist, who informed him of two (other) current patients. My urologist, located near Philadelphia, Pennsylvania, once elaborated (after my not needing dilitation for almost three years - post urethrotomy) that he was somewhat out of practice with the filiform and followers. This leads me to believe that far less than a fraction of one percent of a general urologists practice is composed of stricture-related disorders. I know for a fact that he has over 9,000 active patients.
These observations lead me to the conclusion that for our own well-being, we should educate ourselves to the highest degree possible regarding all aspects of urology. You never know when your knowledge of your case will be necessary in procuring adequate treatment while away from home. Dealing with urinary tract infections has always been my key task health-wise. Yet there are some with the problem who have never had trouble with a UTI. We are each individual, with specific traits, requiring different approaches. The fact that there are a total of around twenty urological surgeons who specialize in urethral reconstruction serving an estimated population of 309 million does not lend confidence that there is enough of a market for a surgeon to be proficient in dealing with complex cases.
I cannot speak for all urologists in general, but mine was an advocate of the proactive approach with regards to my condition. I would often leave his office with a copy of the latest urology journal, or other pertinent medical publication (with the agreement that it would be returned within two weeks), and within two years of diagnosis, I had (literal) volumes of photocopied articles, a Tabor's Medical Encyclopedia, a Gray's Anatomy, and two books on urological nursing in the 20th Century. This information helped make sense of the decisions my urologist made. Furthermore, with the help of the nursing publications, I discovered methods for avoiding urinary infections, and methods of care important after each subsequent surgery. What it all boils down to is that we each must develop a system keyed to provide the optimum of care, as this will help minimize hospitalizations, and possibly surgeries.
* Returning to "Scott": When I met him, he had undergone an emergency suprapubic catheter insertion (a catheter and urinary drainage system inserted directly into the bladder) as a result of a stricture which could not be resolved by dilitation. He had the procedure performed in the ER of a local hospital, it was deemed necessary because it was thought that he was about to encounter a urinary reflux (due to the fact his bladder was so full). His stricture was thought to be nearly 4 centimeters in length, which is fairly long. Our urologist wanted him to go to one of the teaching hospitals in Philadelphia, but his parents were apprehensive, as their primary physician informed them that the problem could be dealt with adequately in a local setting. His exact words were "it's not open heart surgery".
I explained that (at that time) eleven years had passed since being diagnosed. I had undergone around forty - plus dilitations, two urethrotomies, a urethroplasty (failing at that very moment), one emergency dilitation (similar to his event), a suprapubic catheter failure, and that if I had it to do over, I would have searched for a specialist in strictures and their care. By that point in time, the scarring to my urethra was already substantial, and had I been given the option to seek out a surgeon/specialist at a teaching hospital, that my outcome would have been far different.
There are no accurate statistics of the percentage of the male population with the malady. The co-moderator of this forum goes to a prominent west-coast urologist, who informed him of two (other) current patients. My urologist, located near Philadelphia, Pennsylvania, once elaborated (after my not needing dilitation for almost three years - post urethrotomy) that he was somewhat out of practice with the filiform and followers. This leads me to believe that far less than a fraction of one percent of a general urologists practice is composed of stricture-related disorders. I know for a fact that he has over 9,000 active patients.
These observations lead me to the conclusion that for our own well-being, we should educate ourselves to the highest degree possible regarding all aspects of urology. You never know when your knowledge of your case will be necessary in procuring adequate treatment while away from home. Dealing with urinary tract infections has always been my key task health-wise. Yet there are some with the problem who have never had trouble with a UTI. We are each individual, with specific traits, requiring different approaches. The fact that there are a total of around twenty urological surgeons who specialize in urethral reconstruction serving an estimated population of 309 million does not lend confidence that there is enough of a market for a surgeon to be proficient in dealing with complex cases.
I cannot speak for all urologists in general, but mine was an advocate of the proactive approach with regards to my condition. I would often leave his office with a copy of the latest urology journal, or other pertinent medical publication (with the agreement that it would be returned within two weeks), and within two years of diagnosis, I had (literal) volumes of photocopied articles, a Tabor's Medical Encyclopedia, a Gray's Anatomy, and two books on urological nursing in the 20th Century. This information helped make sense of the decisions my urologist made. Furthermore, with the help of the nursing publications, I discovered methods for avoiding urinary infections, and methods of care important after each subsequent surgery. What it all boils down to is that we each must develop a system keyed to provide the optimum of care, as this will help minimize hospitalizations, and possibly surgeries.
* Returning to "Scott": When I met him, he had undergone an emergency suprapubic catheter insertion (a catheter and urinary drainage system inserted directly into the bladder) as a result of a stricture which could not be resolved by dilitation. He had the procedure performed in the ER of a local hospital, it was deemed necessary because it was thought that he was about to encounter a urinary reflux (due to the fact his bladder was so full). His stricture was thought to be nearly 4 centimeters in length, which is fairly long. Our urologist wanted him to go to one of the teaching hospitals in Philadelphia, but his parents were apprehensive, as their primary physician informed them that the problem could be dealt with adequately in a local setting. His exact words were "it's not open heart surgery".
I explained that (at that time) eleven years had passed since being diagnosed. I had undergone around forty - plus dilitations, two urethrotomies, a urethroplasty (failing at that very moment), one emergency dilitation (similar to his event), a suprapubic catheter failure, and that if I had it to do over, I would have searched for a specialist in strictures and their care. By that point in time, the scarring to my urethra was already substantial, and had I been given the option to seek out a surgeon/specialist at a teaching hospital, that my outcome would have been far different.
Subscribe to:
Posts (Atom)